Living with Vitiligo

When I was 9 years old, my mom and I noticed a couple white spots on both of my legs. We monitored the spots for a few months and then decided to make a doctors appointment because they were becoming larger in size.

The day of the appointment came. I didn't know it at the time, but that appointment would change my life FOREVER. I was diagnosed with Vitiligo, which is an autoimmune disease that destroys the pigment of your cells. At the time, Vitiligo wasn't very known in the community and unfortunately, my skin color was changing rapidly.

There is no cure for this disease even though we were led to believe that scientists were close in finding one. In my teen years I tried PUVA light treatments. These treatments occurred 2-3 times a week. I would have to take 2 pills two hours prior to the light treatment. These pills made me very nauseous and I had to do everything in my power to not throw up because then I’d have to take replacement pills. I’d have to wear UV protected glasses (which were not flattering) because your eyes became sensitive to light. After two hours, We would go to the doctors office and go in a UV light standing bed. Basically I would purposely burn and there was a small chance that pigment would regenerate. It was a slow process and it worked for a little while, but I didn’t want to put my body through that anymore.

I decided to let my pigment disappear and deal with the mental/emotional issues instead. Dealing with this disease is not easy for anyone. I had beautiful tan skin and know I had white patches all over my body. I felt like all eyes were on me and thought kids would no longer be my friend because of it. Thankfully I had a wonderful support system. My family, an amazing school councilor, and my friends that I would talk, cry, and hug out my issues with.

Fast forward....I’ve been living with this disease for 26 years! I have 3 beautiful kids, a husband I can’t get enough of (who loves me for me), a job that I absolutely love, and I’m learning to love myself. See, I ended up losing all of my pigment, which is rare. Not everyone gets to experience that.

Now days, I just make sure I have sunscreen with me during the summer because I burn so easily. I guess that’s the one benefit of living in North Dakota.... majority of the time it’s winter here. Even though I don’t wish this disease on anyone, it is manageable and honestly it could be a lot worse. Find that acceptance... Love yourself...Share your experience for others to learn from.

Be on the lookout for an upcoming blog where I will talk about what may be causing some regeneration of my pigment and how we dealt with my son being diagnosed with Vitiligo.